Living with MS
Living with multiple sclerosis presents many challenges to individuals and families. In addition to addressing the physical symptoms caused by MS, people with MS and their families must find ways to adapt to other life changes resulting from a chronic illness.
Most people adapt quite well to life with MS. Since there are many new aspects to living with a chronic illness, it can be very helpful to confer with our social worker about the psychosocial aspects of life with MS, which include:
- Adjusting to the diagnosis – This can be a trying time, in which during a very short period of time, one’s view of oneself changes from being a healthy person to a person with a chronic illness.
- Establishing a good working relationship with your medical care providers. Having a chronic illness means that you will have long-term relationships with your neurologist and other care providers. Counseling can help a person and family learn about navigating the medical system.
- Multiple sclerosis can put additional strain on families and on couple relationships. It can be helpful to discuss couple and family issues with an impartial professional. Most people with MS identify uncertainty as one of the most difficult aspects of life with MS. It is often helpful to discuss your feelings of uncertainty about the future, and other sources of anxiety.
- Depression is found more often among people with MS than in the general population. Depression can be very disabling, and can interfere with work and relationships. Depression can be treated, and patients who are feeling depressed are encouraged to contact their neurologist, or our social worker, Elizabeth Misasi.
- Children who have a parent with MS often have many questions and misconceptions about MS. Children can benefit from a discussion with someone who can answer their questions about the cause, prognosis, and course of MS.
Appointments with our social worker can be made through the front desk, at 617-525-6550. We would also be most happy to arrange referrals with mental health providers in the community who have experience working with individuals with MS and their families.
Support Groups
Finding connection with others experiencing MS can be very helpful for patients and their family members. The following, is a list of resources to find support:
- The MS Society keeps an active list of local support groups. Each group is unique, so people are encouraged to contact the group leaders before your first meeting to make sure the group will be a good fit for you. https://www.nationalmssociety.org
Phone Number:1-800-344-4867 - The Multiple Sclerosis Foundation also keeps an active list of local support groups. Again, it is important to contact group leaders before attending. https://msfocus.org/Get-Help/Support-Groups
- The MS Society also has many active online support groups and discussion boards for people with MS. http://www.msconnection.org
- Mass General Brigham/MGB is also currently running a support group the 3rd Tuesday of each month from 5:30 – 6:30 PM for people with MS in their 20s and 30s. Please call Liz Misasi, LICSW at 617-525-6550, for more details and to RSVP.
Why Should I Exercise?
Physical activity can be beneficial in managing multiple MS symptoms. Improvements can be seen in:
- Cardiovascular fitness
- Strength
- Fatigue
- Mood
- Flexibility
- And more!
To read about the additional benefits of exercise, hear first person accounts and access other resources, click here!
FREE workouts to do in the comfort of your own home!
Diet & Nutrition
What diet is best for those with MS?
Evidence-based dietary guidelines developed for the US population to maintain good health and reduce incidence of chronic disease.
Key recommendations:
- Limit calories from added sugars and saturated fats
- Focus on variety
- Choose nutrient dense foods
- Be mindful of portion sizes
Demonstrated to reduce risk of heart disease
Plant-based diet including:
- Fruits and vegetables
- Whole grains, legumes, and nuts
- Primarily fats consisting of olive or canola oil
- Utilizing spices instead of salt
- Minimizing red meat
Demonstrated to lower blood pressure.
Key recommendations:
- Increase intake of fruits and vegetables, whole grains, lean meat, and dairy
- Consume high fiber and moderate fat
- Focus especially on potassium, magnesium, and calcium rich foods
DO
- Focus on variety to ensure you get all nutrients you need in a day, as each food group has different benefits
- Consume 3-5 servings of fruits per day (½ cup or 1 small piece)
- Consume 3-5 servings of vegetables per day (½ cup cooked or 1 cup raw)
- Eat at least 3 servings per day of whole grains
- Consume fish high in omega 3 fatty acids (tuna, salmon, or mackerel) at least 1-2 times per week
- Include nuts (5-7 oz per week)
- Eat monounsaturated fats (olive oil, avocado, peanuts, almonds, and walnuts) and omega 3 fatty acids (walnuts, flax seeds, chia seeds, canola oil) as primary fat sources
LIMIT
- Processed foods
- Sodium
- Trans fatty acids (Crisco, margarine) and omega 6 fatty acids (corn oil, safflower oil, vegetable oil)
- Red meat
- Refined sugar
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Nutrition Services
The CCI Nutrition Core provides:
- Research diets, nutrition intake data collection and analysis
- Patient nutrition assessment using a variety of modalities conducted through the CCI inpatient, outpatient, and extended off-site facilities
- Services in accordance with research study design, protocol orders and participant requirements
Please ask your neurologist if you are interested in any of these services.
We know the foods we eat affect development behavior, health conditions, and lifespan. Although diet is not a cure for MS, it has been shown to improve some symptoms and reduce conditions known to influence MS disease course including:
- Obesity
- Cardiovascular disease
- Hypertension
The foods you eat influence your gut microbiome. There is growing evidence that the gut microbiome plays a role in the risk and potentially the course of MS. There have been many different diets published for MS but only a few have shown positive research findings. These dietary patterns are highlighted here because they have been shown to be helpful for improving health.
There are certain aspects of these diets that we combine for MS due to the anti- inflammatory properties and risk reduction of multiple diseases.
Positive Psychology for Individuals with MS
What is Positive Psychology?
Positive psychology is an area of psychology that focuses on helping people to experience greater life satisfaction. Positive psychology focuses on improving positive emotions through the practice of simple exercises that are designed to help people feel more hopeful, grateful, and happy.
We encourage you to give each of these five exercises a try – even if some seem too simple or completely unrelated to your health at first – because many people find that the exercises actually end up having a much more powerful effect than they expected. We recommend you complete one exercise per week over the next five weeks.
Take 10-15 minutes to complete this exercise. Use this time to write down three positive things that happened this week. The things you list can be relatively small in importance ("I enjoyed my lunch today") or relatively large in importance ("I'm feeling much better after seeing my neurologist."). They can be related to your multiple sclerosis, or completely separate.
As you write, please follow these instructions:
- Give the event a title (e.g., "sister remembered my birthday")
- Write down exactly what happened in as much detail as possible, including what you did or said, and if other people were involved, what they did or said.
- Record how this event made you feel at the time. Use the most specific positive emotional words that you can think of to describe how you felt: Joy? Satisfaction? Relief?
- Record how this event makes you feel now as you remember it.
This exercise has two parts:
- First, you will review the list of Personal Strengths that follows and pick one of your signature strengths. A signature strength is one that makes you feel:
- A sense of ownership and authenticity ("This is the real me")
- A feeling of excitement or satisfaction while using it
- Energized, rather than exhausted, while using the strength
- You will then use that signature strength in some way in the next 24 hours and will record how you used it, the result, and how you felt while using it.
- List of Personal Strengths:
- Curiosity [interest]: Taking an interest in an experience for its own sake; exploring and discovering.
- Love of learning: Mastering new skills and knowledge, whether alone or with others.
- Bravery [courage]: Not avoiding threat, challenge, difficulty, or pain; acting on your beliefs even if unpopular.
- Persistence [perseverance]: Finishing what you start; persisting with something in spite of hard times or barriers.
- Honesty [authenticity]: Presenting yourself in a real and genuine way; taking responsibility for your feelings and actions.
- Zest [enthusiasm]: Approaching life with excitement and energy; feeling alive and activated.
- Love: Valuing close relationships with others, particularly those in which sharing and caring are returned.
- Social intelligence: Being aware of the feelings and ideas of yourself and others.
- Teamwork: Working well as a member of a group or team; being loyal to the group.
- Fairness: Treating all people the same according to the ideas of fairness and justice; not letting personal feelings get in the way of decisions that affect other people.
- Leadership: Encouraging a group to get things done and still maintaining good relationships with group members.
- Humility / Modesty: Letting your accomplishments speak for themselves; not bragging that you are more special than you really are.
- Self-control [self-regulation]: Regulating what you feel and do; being disciplined; controlling your appetites and emotions.
- Appreciation of beauty and excellence: Appreciating beauty, excellence, and/or skilled performance.
- Humor [playfulness]: Liking to laugh and tease; bringing smiles to other people; seeing the light side of life.
- Spirituality [religiousness, faith, purpose]: Having clear beliefs about a higher purpose, the meaning of life, or the meaning of the universe.
- List of Personal Strengths:
Use the next 15 minutes to write a gratitude letter. Use the instructions below to help guide you through this process:
- Use whatever format you like, but remember to write as though you are directly addressing the individual you are grateful to. It is often helpful to start the letter with "Dear XXXX," and end with "Sincerely, ____."
- Do not worry about perfect grammar and spelling.
- Describe in specific terms why you are grateful to this individual and how the individual’s behavior affected your life. Focus on the specific parts of the behavior that most affected you and the details about how this affected you afterwards.
- Describe what you are doing now and how often you remember their efforts.
- You are welcome to show or give this letter to anyone you please. People have found that they can get even bigger boosts of good feeling when they share the letter with the recipient. On the other hand, the letter you write is a private document in which you can express your gratitude freely, and you do not have to share any of it with another person if you do not want to.
Over a 1-2 day period, do the following three activities:
- Choose an enjoyable activity to do alone and do it to completion. For example, you might read a book or an article in a magazine, listen to favorite music, remember good times from the past, look at a nice view, or meditate.
- Choose an enjoyable activity to do with others and do it until completion. For example, you might go for a walk with your spouse or a friend, talk to an old friend on the phone, or watch a movie with others. Sometimes it’s helpful to first identify the "who," and then you can figure out the "what do to with them."
- Choose an activity you deem important and meaningful and do it to completion. For example, you might make a list of your medications to keep in your wallet along with your insurance information, or you might find and complete an important application. If a task seems too big, you could choose to set a goal of starting with a smaller, manageable step that will move you closer to completing the task.
Once you have done these activities, record what occurred during and after the 3 activities. You may wait to write down what happened after you have done all 3 activities, or you may find it easier to record the event right after each individual activity rather than waiting until you have completed them all.
Take a few minutes to think about a time when you succeeded at something. It can be a small, daily task, or an incredibly difficult task that happened in a specific moment, or a longer-term goal/accomplishment. Think as specifically as possible about the situation (for example, instead of "raising my kids," it might be "raising my son to be kind to others, like the time he thoughtfully consoled a classmate who had lost his grandmother").
If you can't think of anything, you may be trying too hard to think of a "major" life event. Think about the past few days: was there anything that happened, even very small, that was a success? On the other hand, you may be thinking too "small"—think about the big events of your life, and times when you were the proudest or happiest—those times may be worth thinking and writing about.
Use the instructions below to help guide you through this process:
- You will first write about the event. You will then write about the positive feelings and thoughts you had during the event. Then you will write about the positive feelings and thoughts you have now, as you look back at your success.
- Finally, you will write about how you did it—what role you had in making the success happen and which of your good qualities "came out". Remind yourself about other times when you have used those good qualities.
- Do not worry about perfect grammar and spelling.
This is Just the Beginning!
We hope that these exercises have helped to provide a boost in your positive thoughts and feelings. Feeling more positive may even be making it easier to live with a chronic illness. If the exercises have helped you to feel more proud, grateful, satisfied, or energetic, the next step is to sustain this new level of positive thoughts and feelings. You know this intimately if you've worked hard to make changes before but found that it's hard to stick to those changes. We would guess that some of your other attempts might have worked, just not for long. However, by using the exercises you've practiced these last five weeks, you can sustain gains in positive experiences. In fact, the more you perform these activities, the more you may find that they become a natural, enjoyable part of your life.